Chronic Kidney Disease Patient Education: A Powerful Tool to Help Prevent CKD Progression

Care plans to manage chronic kidney disease (CKD) and slow disease progression typically include lifestyle modifications, medical management, and interdisciplinary care coordination. CKD health education can help make each one of those interventions more effective by empowering patients to take control of their health and, in turn, improving patient outcomes and quality of life.

Chronic kidney disease patient education includes programs, resources, and activities designed to help people with kidney disease make informed decisions about their health, care, and treatment options. CKD health education is provided by nephrologists and other healthcare professionals through patient visits, online resources, support groups, and community programs. Topics covered include:

• CKD stages: Information on how and why CKD progresses to end-stage kidney disease (ESKD) and steps that can be taken to help slow progression.
• Managing risk factors: Support for controlling high blood pressure, diabetes, and other conditions that contribute to CKD.
• Nutrition guidance: Information about renal nutrition to minimize further kidney damage.
• Medication management: Guidance on how to properly take medications that protect kidney function.
• Lifestyle modifications: Advice on exercise, weight management, and smoking cessation.
• Modalities: Education on treatment options including transplant, home dialysis, in-center dialysis, and active medical management without dialysis.
• Mental health and emotional support: Resources to cope with CKD.

Providing effective patient education can be challenging

There is a huge gap in public awareness of kidney disease compared to other diseases such as cancer and heart disease. Even among patients with CKD, awareness is low; a national survey found one-third of nephrology practice patients have limited or no understanding of their disease and no awareness of their treatment options.¹ Healthcare providers know patient education is important for improving outcomes, but they often have limited time and resources to ensure patients fully understand their disease, care plan, and treatment options.

One of the challenges when it comes to educating patients on CKD is the emotional toll of the disease. Many people with CKD feel overwhelmed by their diagnosis, and some patients initially react with anger, sadness, and even denial. Providers often find themselves helping patients grapple with behavioral health concerns including depression or anxiety, which are common among CKD patients, as part of the CKD education process.

It can be even more difficult to understand CKD health education materials and manage a chronic disease for people who are struggling to meet their basic needs and dealing with food insecurity, housing instability, lack of transportation, limited educational opportunities, and other social determinants of health (SDoH) barriers. SDoH can increase an individual’s risk of CKD, as well as worsen quality of life and disease progression for those who have CKD. Addressing SDoH is an important step toward improving health equity for people with CKD, as studies have correlated lower socioeconomic status with a higher prevalence of CKD, and rates of CKD are higher among Black and Hispanic than white and Asian people.²

In addition to combatting an overall lack of public awareness, providers frequently face challenges educating patients with limited health literacy and language barriers. In these instances, it is a best practice for providers to use an interpreter to ensure patients understand medical information.

Resources such as videos can help improve CKD health education

Patients benefit when CKD health education is personalized and offered in manageable amounts that focus on what’s next in the process, rather than trying to explain everything all at once. This individualized, stepwise approach is critical to prevent information overload, improve comprehension, and allow patients to better absorb and apply key concepts over time.

A variety of tools and strategies are available to improve the effectiveness of chronic kidney disease patient education:

• Handouts and decision aids: Booklets and other printed materials, such as results from the Kidney Failure Risk Calculator, graphs that show creatinine levels or estimated glomerular filtration rate (eGFR) at each stage of CKD, and other educational resources, help patients better understand how their disease is progressing and the impact of interventions.
• Customized multi-media materials: Organizations such as the National Institute of Diabetes and Digestive and Kidney Diseases, the National Kidney Foundation, and the American Kidney Fund offer health information for patients. To bolster patient education, nephrology practices also use tools such as Interwell Learning, which offers resources such as bilingual videos, provider training, workshops, and print patient education materials.
• Support groups and community forums: Online and local support groups promote shared learning and real-time interaction, fostering peer support and a deeper understanding of disease management. Some hospitals and clinics offer dedicated support groups for kidney transplant patients, dialysis patients, and loved ones. 

In addition to patient education tools, providers rely on technology such as Acumen Epic Connect, a nephrology specific electronic health record (EHR), to view patient histories and understand their individual medical needs to personalize educational efforts.

A team-based approach is proven to advance health education for CKD patients

In value-based care models, nephrologists can rely on additional team members to support CKD health education. These team members may include embedded renal care coordinators (RCCs), advanced practice providers (APPs), nurse care managers, social workers, renal dietitians, and non-clinical care coordinators. Having wraparound support from an interdisciplinary team enables stronger patient-provider relationships, more touchpoints to get caregivers or support partners involved, and a personalized approach to meet patients’ personal needs.

For Alice Lasater, a 69-year-old grandmother from Pueblo, Colorado, this team-based approach has proven invaluable for managing her late-stage kidney disease. Alice’s health insurer partners with Interwell Health, a value-based kidney care provider, granting CKD patients like Alice access to a full team to support education and disease management. Alice says her “kidney club” taught her about a kidney-friendly diet and provided strategies to help slow the progression of her CKD, keeping her out of the hospital and renewing her hope in the future.

“Doctors probably know that information, but they don't have the time to really go over so much detail with each patient,” said Alice. “Interwell made me feel like they were sitting down at the kitchen table with me and a cup of coffee, and we'll sit here and hash this out if it takes the whole pot.”

By preventing dialysis, CKD education can help improve patient outcomes

Ultimately, the goal of CKD health education is to slow CKD progression and help patients live longer, healthier lives. Patient education helps improve treatment adherence, increase optimal starts, and decrease hospitalizations. In addition, research has shown that patient education can extend the time to dialysis, lengthen survival on dialysis, and improve patient mood and quality of life.³ Further studies show patient education leads to higher rates of care, a higher likelihood of permanent access for dialysis initiation, high rates of satisfaction with care, and increased preemptive transplant wait listing.⁴

In contrast, patients who lack patient education and aren’t as engaged are more likely to “crash” into dialysis and need urgent care for their untreated kidney disease before they’ve spoken with kidney specialists and developed a treatment plan. This crash often equates to starting dialysis with a central venous catheter, which is associated with higher rates of mortality than other forms of dialysis access due to complications such as blood clots and infection.⁵

Improving patient outcomes leads to lower healthcare costs for CKD

In addition to improving health outcomes, CKD health education also leads to reduced healthcare costs, because a patient who is educated and empowered can actively take steps to lower their risk of complications and minimize their need for costly interventions and hospitalizations.

When patient education is effective in helping to prevent dialysis, it can contribute to significant cost savings. One study found that just a one percent reduction in the incidence of patients progressing to dialysis can save a health plan approximately $52 million in dialysis initiation costs and $30 million in each subsequent four-month cycle.⁶

The study also showed that the most expensive costs associated with CKD are dialysis and the management of common major acute complications. The researchers behind the study say the results “demonstrate the imminent need for appropriate monitoring and treatment to avoid downstream costs in this patient population.” Likewise, patient education can also play a role in helping to slow disease progression to help prevent costs associated with acute interventions and dialysis.

When people living with kidney disease have access to the care, CKD health education, and support they need, outcomes improve, and that’s beneficial to patients, providers, payers, and the healthcare system overall.

 

References

1. Clinical Journal of the American Society of Nephrology: Educating Patients about CKD: The Path to Self-Management and Patient-Centered Care. https://journals.lww.com/cjasn/Fulltext/2016/04000/Educating_Patients_about_CKD__The_Path_to.20.aspx#:~:text=Research%20shows%20that%20patient%20understanding%20of%20CKD%20improves,permanent%20arteriovenous%20access%20at%20initiation%20of%20dialysis%20%282%29.
2. Cureus: Social Determinants of Health and Chronic Kidney Disease. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7537483/#
3. Clinical Journal of the American Society of Nephrology: Educating Patients about CKD: The Path to Self-Management and Patient-Centered Care. https://journals.lww.com/cjasn/Fulltext/2016/04000/Educating_Patients_about_CKD__The_Path_to.20.aspx#:~:text=Research%20shows%20that%20patient%20understanding%20of%20CKD%20improves,permanent%20arteriovenous%20access%20at%20initiation%20of%20dialysis%20%282%29.
4. Kidney Medicine: Person-Centered Kidney Education: The Path Forward. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7434620/
5. Seminars in Interventional Radiology: Update on Insertion and Complications of Central Venous Catheters for Hemodialysis. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4803506/#:~:text=Central%20venous%20catheters%20are%20a%20popular%20choice%20for,including%20a%20high%20morbidity%20from%20thrombosis%20and%20infection.
6. American Journal of Managed Care: Medical Costs for Managing Chronic Kidney Disease and Related Complications in Patients with Chronic Kidney Disease and Type 2 Diabetes. https://www.ajmc.com/view/medical-costs-for-managing-chronic-kidney-disease-and-related-complications-in-patients-with-chronic-kidney-disease-and-type-2-diabetes.